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Not Today

It's been awhile since I updated the blog, mainly because I'm just so unbelievably tired at the end of every day. I have great intentions of sitting down and blogging and then I can't keep my eyes open. But, I'm fine and I'm still hanging in there. I had the 7th (out of 12) Taxol treatment on Friday. I'm counting down the days until June 14th, my last chemo!

Here's the part of my post where I complain about what this poison is doing to me...

I go weekly now and while this drug is milder than the AC I was on before, it's starting to show it's uglier side now that I'm halfway through it. You have to remember, Chemo is cumulative, which means the effects get more intense over time (with each treatment). This drug doesn't knock me out cold or cause the vomiting I had before. It's more of a sneaky little passive aggressive bitch.

I'm freaking tired and now, my body aches. I have to keep moving, because if I sit too long and then try and get up, I'm a mess. I notice the muscle aches mostly when I'm walking up the steps for the 14th time in an hour because someone forgot something (which is always). My legs feel like I've been working out and my arms are having an even harder than normal time holding Oliver, and all his 34 pounds.

My fingernails literally hurt. It feels like I got them shut in a door, all of them, all the time. Apparently fingernails turn black and die while on Taxol and sometimes the nails lift up from the finger and fall off entirely. So, I wonder if the pain I feel is them dying. I want to prevent any further damage, if possible, so I am applying some nail strengthener nail polish daily. If anyone has been through this and has helpful hints to keep my nails from falling off, please share!

While my fingernails are hurting, the tips of my fingers are starting to feel the effects of neuropathy. I'm wearing my ice gloves and socks during treatment, so I imagine the neuropathy would be more advanced if I wasn't.  I'm noticing my hands aren't working quite as well as they used to. I've always been clumsy, but now I'm fumbling for and dropping things like never before and it's harder to open packaging (plus it hurts my nails if I am too rough in the process).  The tingling comes and goes, so my Oncologist doesn't want to lower my dosage or change my plan quite yet.  I'm just afraid of it getting worse.

I caught a glimpse of myself in the mirror today and realized I have aged 10 years in the past few months. I'm hoping a lot of it is the Chemo and that my skin and coloring will rebound once I'm done. But right now, I feel as bad as I look.

Wearing something on my head, in Florida, while having my body forced into medical menopause (hello, hot flashes) is the worst thing yet. Ok, not the actual worst thing, but it does suck ass. My head is sweating, constantly, whenever I'm wearing a hat/scarf. Forget about my wig, that thing is not only itchy but made of fire - it's hot as hell! So, this means that when I'm home, I'm going commando - nothing on my head, just good old baldness.

I'm not supposed to spend much time in the sun while on Taxol and now I know why, the second sun hits my skin it feels like it's burning. Kind of feels like I have a sunburn, immediately upon exposure. Then, you add a cover on my head and Florida humidity and I am freaking miserable. I seriously hate going outside right now.

After all of that woe-is-me complaining, and in the midst of all of this shit, I find myself incredibly grateful. I mean, I'm here. I AM STILL HERE. At the end of every long day, I always remember that this disease is trying to kill me and I will not let it - not today (in my most Arya way possible).

Hanging in there

I guess you could say I'm deep in the trenches of this journey right now.  I've been doing this for two months and it hasn't gotten any easier.  I want to tell everyone that I march into the hospital ready to battle cancer like a superhero. But, I don't. It's hard to come in fighting, knowing how horrible you're about to feel, even if you do know it's saving you.

I finished the 4 rounds of AC chemo and started the 12 rounds of Taxol this past Friday. Yes, TWELVE rounds. This time, I'm going weekly and it's supposed to be more mild than the "red devil" I was receiving before. So far, I have felt less nausea and didn't spend the weekend puking, which is a major win. The most common side effect from this drug is neuropathy, which can be permanent. I'm super paranoid about it, so every tingle I feel I'm monitoring like crazy. My Oncologist told us about a recent study which found that cryotherapy (cold) could help prevent some of the neuropathy. So, when I go in for my treatment, I have to wear these frozen gloves and socks. It was brutally uncomfortable, but if it will prevent the neuropathy, I'll keep doing it.

What other weird side effects am I having?  Well, a strange combination of fatigue and insomnia. Weird, right? I'm beyond tired, and have zero problems falling asleep, but staying asleep is impossible. I'm waking up every night around 3 or 4 and I'm just lying there until it's time to get up.

Thanks to the Taxol, the hot flashes have started and they are horrible, all the sudden you feel flushed and are drenched in sweat. You have to stop whatever you're doing and just sit down. If I don't sit down, I feel like I'll faint immediately. In my case, I have to rip off whatever head cover I have on to get the hot flash to pass. Then, once it passes, I'm freezing because I'm covered in sweat and sitting on a cold floor or under an air conditioning vent. I don't know how I will handle these hot flashes as the brutal Florida heat approaches.

My appetite has definitely decreased, which means I'm not eating much. Honestly, I don't mind this side effect because it has put a stop to the weight gain and bloat I was feeling before. I'm generally not hungry, but because my anxiety is out of control, I always have this anxious feeling in my stomach. It's a constant butterflies-in-the-stomach feeling. The fact that I'm not eating much is probably contributing to the general weakness I'm feeling. My arms and legs in particular feel very heavy and become sore very quickly.

So, that's my latest update. I hate that I'm just complaining about how lousy I feel in these posts. In real life, I feel like I'm always putting on a brave face and "hanging in there", so it's nice to have some place to come and vent.

Chemo Round 3

Man, Chemo Round 3 kicked my ass. I suppose the side effects are becoming worse because my body never quite recovers to 100% before another round is administered. I keep saying this, but it really does knock you out, I've literally never been this tired. Your body shuts down and you just sleep. Then you puke, then you sleep, then you sleep some more.  Like, too tired for Netflix, tired. Sunday I'm not sure I even had the tv on. I just slept. But for days, not hours. Then, suddenly, you're ok. Not great, but like, day 3 of a bad cold. That's when I start hearing Gloria Estefan singing "Coming out of the Dark" in my head.

Once you're out of the deep sleep all the other weird shit starts happening. I'm mostly bald, but for a little peach fuzz remaining. My skin is like an alligator but nearly everything irritates it, so I can't use most lotions marketed for dry skin. My nose is dry and sore, but won’t stop running (guess this happens because my nose hairs fell out losing their protective barrier). My eyes are so dry that I can't handle wearing my contacts, so I had to go get new glasses/sunglasses that I could wear everyday instead. While I was there, I had my first in bald head in public experience. I had to remove my beanie so they could fit glasses on my head. It was terrifying. Thankfully, everyone involved was incredibly supportive and kind - it was just scary being that vulnerable. Now, I wait 10 days for my new “spent too much on those” glasses.

What else has been going on? Germs. Germy, germ, germs everywhere. Remember, Chemo kills everything, including good things. Like my immune system. I literally have no immune system. So, I’m super weary of the biggest germ makers...kids. Elliott only goes to school for 4 hours, 3 days a week. I’ve seriously considered pulling him out of school entirely until my treatment is over. Thankfully I haven’t had to, yet, because his school has been AMAZING about slathering him in sanitizer during the day and before pickup. They tell me anytime a bad virus appears which lets me decide if I should send him in or not. Of course, nothing can prevent preschool kids from sharing germs, but we are trying our best. Additionally, friends and neighbors with kids, I promise I’m not trying to offend you - but your kid must be slathered in sanitizer BEFORE they come in to contact with my children. And if they have even a tiny runny nose or cough, I’m sorry, but no. Keep away. One small cold can derail my treatments and/or even put me into the hospital. So, I’m serious, sanitize before coming over. Once this is all behind us, I promise we can go back to our germy ways.

Besides germs, I’m still suffering from some serious Chemo brain. Writing this post has been way more challenging than past ones and I feel like I can’t complete a thought.

I’m still self conscious wearing my scarves so, going out to a Lionel Richie concert was kind of a big deal for me.

All of this is awful and it’s hard. But last night, Elliott randomly said “I love your fuzzy hair Mom”, I melted and easily remembered why I’m doing all of this.

How to Help Someone Going Through Cancer

Yep, I chopped my hair off. It started falling out, in dramatic fashion, everywhere. The amount of hair coming out would make anyone gasp, even if you knew it was coming. Cutting it off was easy, because it was going to be a relief to not see clumps of long hair all over the place. I took a shower after I got home, rookie move. Now this so-called-pixie-cut is patchy and see through in many places. 

I'm 5 days post my second round of Chemo and I'm coming out of the hole that you climb into during the aftermath. I can feel the bloat coming on. Basically, I'm sick with the worst stomach flu of my life for 4 days, then I start retaining every ounce of fluid available. This week I'm also fully engulfed in the Chemo fog. I AM REAL DUMB right now people, REAL DUMB. Like, it's hard to use actual words when I'm talking. Thankfully, I can still type, but speaking is a struggle.

I also wanted to touch on a topic that is hard for me, but something that everyone is asking about...what can you do to help me? I don't really know. Honestly, when you're in the midst of a crisis, it's extremely hard to even determine what help is needed, much less ask for it. If you're lucky enough, you'll have a few people in your life that don't ask - they just do. I feel like the luckiest cancer patient around, because I've had an outpouring of help. So, I'm going to mention a few things that have been helpful in some capacity in case you know anyone who is going through this, that you may want to help.

My Aunts and Uncle sent me my favorite hometown pizzas, from La Casa Pizzeria. Cooked fresh, then frozen and delivered right to my door. What a time to be alive! We've already had one and it was amazeballs. If y'all ever find yourself in Omaha, do yourself a solid and visit La Casa. You won't be disappointed.

My brother and his girlfriend sent ice cream, deliciously personalized ice cream, from another Omaha company, eCreamery. Not only was it packed adorably with personalized ice cream creations, it's actually totally delicious ice cream.  I would highly recommend using them if you need to send someone a gift in the future. Who doesn't love ice cream?!

My Aunt & Uncle that live nearby-ish sent over casseroles for dinner (for several nights) which was super helpful. Elliott still eats a strict hot dog and/or chicken nugget diet, but the rest of us really appreciated not having to cook while still being able to enjoy a delicious meal. 

My Mom and Mother-in-law selected a maid service and sent them over to clean every 2 weeks. I CANNOT express how awesome this is. She's only here for 4 hours every 2 weeks, so priorities are a must, but I may keep her once I'm Cancer free just because of how amazing it is to have someone else pitch in to clean this place.

I'm blessed with an amazing tribe and family. My parents, Mother-in-law, brother-in-law, friends and my Aunt & Uncle have all stepped up and babysat the kids while I ran to appointments and procedures during the staging portion of this journey. It helped keep me (moderatly) calm knowing that the kids were with people they love while Matt and I were away. And now, another member of the tribe, has volunteered her time to become my sister wife. If she wasn't here during the 4-5 days immediately following my Chemo I would simply not be able to survive. I'm able to nap, rest and puke uninterrupted while she takes care of the kiddos.  If it wasn't so annoying, I'd "hashtag blessed" her ass all over the interwebs.

Comfort Items:
Flowers are always appreciated because they help bring a little sunshine inside and make me smile whenever I walk past them. I love having real flowers around but consider it a luxury that this SAHM doesn't indulge in often. So keep 'em coming.

Chemo makes me cold for 4 days, then hot for 4, then back to cold, and so on and so on. So, a comfy robe was a much appreciated gift from a friend. Plus, it was a fancy, schmancy Vera Bradley Robe. So she scored some cool points there.

A friend of my Mom sent me a handmade yellow pashmina. It's beautiful and was incredibly sweet.

Even something as simple as a greeting card expressing your sympathy is enough to boost my spirits.  All my cards are being displayed proudly as I try to bring their positive messages into a daily mantra. While all are loved, so far, this one is my favorite. Because it's just so me.

Hand Sanitizer: 
Seriously, my immune system is donezo. Please don't come around here unless you've slathered yourself (and your children) in hand sanitizer. Because we're basically bathing in the stuff over here, we can always use more.

So, that's it. My big public thank you list and a helpful how-to list for anyone you know that might need a pick me up while battling the Big C.